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        New Message Board Archives >> 2006 General Board Posts >> ClusterHeads - We Need You!
        
(Message started by: rgasperson on Jul 24^th, 2006, 12:10pm)

Title: ClusterHeads - We Need You!
Post by rgasperson on Jul 24^th, 2006, 12:10pm

I had this idea about a week ago, and a few people thought it might be a good idea. I want to put together a book of prose, poetry, photography, and artwork where 100% of the profits will go to OUCH (Organization for Understanding Cluster Headaches).

This is where I need your help. I need you to help supply content for the book. Without you, this book willl not even get off the ground. Look at the following questions and provide an answer for one or all of them.

1. How would you describe the Beast that is your Cluster Headaches?

2. Do you Remember your first Cluster Headache? What was it like and what were the reactions of those around you?

3. What comforts you most during your cycle? why?

4. What would you like to say to someone who is just discovering that their Headaches are really cluster?

5. Do you support a loved one who suffers from Cluster Headaches? Describe what it is like for you to watch them go through the pain, and what you do to try to help them.

6. Do You have any Photography or artwork that is inspired by the pain, or the pain-free moments? email these pieces to <a href="mailto:robert@roberttgasperson.com?subject=CLUSTERHEADS">robert@roberttgasperson.com</a>.

Please tell everyone you know about this post and have everyone you know write something about Cluster Headaches. I will be taking the right to fix your grammar and spelling. I will not change what you write beyond spelling and grammar without asking first.

No one will be paid for their submissions. I will not be keeping any of the profits. Every penny of the profits WILL be going to OUCH.

Wouldn't it be nice to get one of these books in every Neurologist office in the USA.

May you All have Pain Free Nights and Days,
A CH Supporter,
Robert T Gasperson

Title: Re: ClusterHeads - We Need You!
Post by Yorky on Jul 24^th, 2006, 12:15pm

ps will you use a picture of me(would help sell loads of copies)cheers and its a exel idea!

Title: Re: ClusterHeads - We Need You!
Post by Mattrf on Jul 24^th, 2006, 1:44pm

1: The beast is a clever thing, hiding quietly waiting for when you least expect him to attack, and when he does attack he takes no prisoners and is relentless in his attack.

2: s misdiagnosed as a Sinusitis attack, it was the worse I had ever felt and the longest.

3: The laughter and smile of my little girl and the compassion of my wife.

4: You are not alone in defending yourself from this beast, gain strength from your fellow suffers and be strong, never let the beast get the better of you.

Title: Re: ClusterHeads - We Need You!
Post by Charlotte on Jul 24^th, 2006, 1:50pm

How serious are you? I may not have that format in mind, but it would be so helpful if there was some kind of info sheet or booklet available, for Drs & for us. Ouch has a little booklet that my husband found quite informative.

Would this be to celebrate the good things we do, or to share our misery?

It would be helpful if Drs told people about clusterheadaches.com. One of my Drs told me about WebMD but it would have been better to know about this site, back then.

Charlotte

Title: Re: ClusterHeads - We Need You!
Post by Donna_D. on Jul 24^th, 2006, 2:06pm

You might get with Mike Day (Gator). He already has a lot of this information on DVD. He had it available at the Dallas Convention in 2005.

DD

Title: Re: ClusterHeads - We Need You!
Post by ClusterChuck on Jul 24^th, 2006, 2:30pm

I hope I am not killing a good idea, but who are you? What experience do you have in seeing this project thru? And how do we KNOW that what you say IS what you intend to do? Also, how do we know that you are not some charlatan out to pull some sort of scam?

A lot of this is VERY personal, and I would like to know that it is going where you say it will go.

If everything IS as you say, I know I have lots I could give you, and most likely others do too.

But we have been bitten too many times to just jump at a post like yours.

Chuck

Title: Re: ClusterHeads - We Need You!
Post by rgasperson on Jul 24^th, 2006, 5:38pm

:) hmmm. Good. There seems to be some skeptics out there about me. I am glad people just don't byte.

Thank you Chuck and Charlotte for asking some good questions. I will be glad to answer them. I will start with who I am.

My Name is Robert T Gasperson. My website is at http://www.roberttgasperson.com if you want to see more about some of my interests, My Resume and Bio.

My wife (Jennifer), who frequents this forum and website, is a cluster sufferer. I married her in April of this year, and this is my first encounter with just how bad these episodes are.

Part of this project is feeling like I need to do something to help. I hate sitting idly by watching my Wife rock in extreme agony. I can't do much while she is in pain, but maybe I can do something to help find a cure.

I am a Graphic Designer for the Carolina MoneySaver (http://www.carolinamoneysaver.com) in Charlotte, NC. I have worked the 6 previous years for the Sun-Sentinel (http://www.sun-sentinel.com)in South Florida. I have plenty of experience to make this book happen.

I plan to use http://www.Lulu.com to publish the book. I already have several (http://www.lulu.com/rgasperson)books for sale through them. When this book becomes available, I will ask that everyone who buys a book, leave some sort of feedback. This will help create a record of the number of purchases of the book. (I am still looking to try to get Lulu.com or Paypal.com to match the donations to OUCH. If someone knows how this might be done, please chime in.)

I know this is very personal for a lot of people, and I don't expect anyone to want their name on their submissions. I would like everyone to specifically request wether or not they want their name or an alias or annonymous posted next to their writing.

I am not here to embarass or to steal from anyone. If it takes setting up an account for the profits from Lulu.com to go directly to OUCH, I would be happy to still do all the work on the book and let the people of OUCH sell and collect the profits. This way I never touch any of the money, and basically no one will ba able to blame me for any of the money stuff.

I am knowlegable in graphic design. I am sure there are others knowlegeable in business and sales. I would really like this to be a group effort.

I hope this alleviates any skepticism about me and my intentions. I plan to be around for a while. I admit, I still have a lot to learn about Cluster Headaches, but that is why I am here. To Learn and to help where I can.

I will be glad to answer any more questions you might have about me.

Robert T Gasperson
robert@roberttgasperson.com

Title: Re: ClusterHeads - We Need You!
Post by Ghost on Jul 24^th, 2006, 5:55pm

Here is one I posted on writing.com a while back and entered in a poetry contest.

Again
Again the dance is at hand,
freedom from reality.
Remember not what brings you there,
focus on how to return.
Hold tight to what keeps you whole,
breath through the battle,
steady and strong.
March forward the fight is on.
Keep with you the weapons of war,
dance on, dance on,
march into war.
To hope is not weak,
to flee not a coward,
to stand and fight not a hero,
to live is to win.
The battle ongoing,
the beast at the door,
survivors the victors,
must survive once more.
Because of the battle,
our numbers they grow,
the beast more desperate,
tries to pick a new foe.
Because of this stronger we are,
he knows not we unite,
he thinks he has won.
Brought to us the battle,
one at a time,
not knowing we seek out,
more of our kind.
To him we are weak,
frail and alone,
to him we are one,
to him one alone.
One day he will see
the numbers he has brought,
till then we will find,
a means to his end.

Title: Re: ClusterHeads - We Need You!
Post by Ghost on Jul 24^th, 2006, 5:57pm

And my Favorite

It was Christmas time across the world,
For most the pain of days past forgotten.
Shorter the days, and longer the nights,
only the beast wanting to fight.
Knowing the pain would return,
his only belief his concern.
Had to still complete the tasks at hand,
even though he was but a man.
Chronic he now is, days without pain remembers.
Knowing it returns like the burning of embers.
Wishing for relief, for just a few days.
His children he knows will have games to play.
How he wishes he could join, but knows he can not finish,
For the pain like a thief will his pleasure diminish.
Try he will, but succeed still uncertain,
if he puts his guard down and his head will start hurting.
A break he will take, when asked will say,
I am doing just fine, go back in and play.
I only know but for this beast would I be,
A Daddy like my children need me to be.
My life a mess I truly believe,
when the gift of family comes back to me.
To let them down, truly a shame it would be,
the Beast I fight and keep it to me.
For it’s Christmas time and my duty is clear,
the Beast will not win again this year.
Not matter how much I struggle alone,
my children and wife, are my true throne.
For with them I win, alone I may falter,
My life it is clear, My family my alter.
To us that battle no matter from where,
We too are family, an alter to share.
Give hope to each other no matter how hard,
Our love for each other, our true Christmas card.

Mike
12/09/05

Title: Re: ClusterHeads - We Need You!
Post by theOtherCharlie on Jul 24^th, 2006, 6:04pm

What a great idea... Id be happy to help... I'm a designer too... whats that all about? We sniffing too much glue or is the computer screen and carpal tunnel.

I've got a few pictures and several items of prose.
Let me dig em up....

the other Charlie

Title: Re: ClusterHeads - We Need You!
Post by tanner on Jul 24^th, 2006, 9:15pm

I just wanted to say hi and welcome. Sorry (Very) to hear about your wife, but please bring her around ! There are a lot of big hugs to be had here and If what you are wanting to do is a viable (read) accepted idea I for one can send you a bunch of atypical cluster stuff. The kind of things that used to get you flamed on this board ,but as time goes on we are all becoming a much more cohesive bunch ;;D yeah right!!

Nice to make your acquaintance and I hope you are for real and that you will get much cooperation from this group of sicko's. :D

I love these people and I have not even had the chance yet to meet any of them in person.

Good luck.....Tim

Title: Re: ClusterHeads - We Need You!
Post by kevinpix on Jul 25^th, 2006, 12:26pm

Roses are red,
Grass is green.
My pain is less,
Than it's ever seen.

The nerves were killed,
My face is numb.
My fellow "heads,
Call me Dumb.

All I can say,
To my dear friends.
Life is better,
And the smiles never end!

Title: Re: ClusterHeads - We Need You!
Post by Charlotte on Jul 25^th, 2006, 1:36pm

Is Jenrob2006 your Jen?

And welcome aboard.

Charlotte

Title: Re: ClusterHeads - We Need You!
Post by rgasperson on Jul 25^th, 2006, 1:40pm

That is her... My Lovely Wife.

Title: Re: ClusterHeads - We Need You!
Post by Charlotte on Jul 25^th, 2006, 1:56pm

Congratulations on your marriage. I'm glad you found each other.

Charlotte

Title: Re: ClusterHeads - We Need You!
Post by rgasperson on Jul 25^th, 2006, 2:41pm

Thanks so Much Charlotte. She is an amazing, extremely strong woman. I am so blessed to have her.

To everyone, I have started to put together the book. grant it, it is only 7 pages long right now, but I thought it would be good faith to let everyone see the progress of the book. my goal is to have a finished product between 150-200 pages.

http://www.roberttgasperson.com/ClusterHeads.pdf

I have written in red the items that I need to change. I have, and will be asking for your help in the red type. So take a look and let me know what you think.

Robert.

Title: Re: ClusterHeads - We Need You!
Post by Melissa on Jul 25^th, 2006, 3:00pm

Written at the lowest point of one of my cycles before I really got to know all of my friends here...

What's to Come...

Through the backdoor of my mind
whispers of agony fill my time,
dread is silenty approaching near
my eyes stay open, fill with tears,
apprehensive, and ill fated sorrow
waiting for another tomorrow,
no living soul seems to care
about my own personal nightmare,
how dare I dwell, or even think
how much my life can really stink,
HELL to what people will say
I dance with the a$$hole anyway...

The Devil Within

Bladed knives, razor blades,
twist and churn in pent up rage,
eyes shut tight, embracing fear,
knowing that he's standing near...
Look in the mirror, your eyes are black,
now there is no turning back...
The barrel's hollow, the metal's cold,
powder drifts up to your nose...
Take a breath and let it out,
one person knows what it's all about...
fingers shaking, knees are breaking,
muscles tense, stomach quaking...
pull the trigger, let it go,
blown into a big black hole...

I have more, but they disappeared into cyberspace somewhere... :-/

Title: Re: ClusterHeads - We Need You!
Post by Melissa on Jul 25^th, 2006, 3:12pm

woops, sorry, I forgot the answers to the ?'s....

1. How would you describe the Beast that is your Cluster Headaches? As an excruciating, exquisitely unique, relentless pain that hits me up to 4 times a day and lasts for 50 min. each time.

2. Do you Remember your first Cluster Headache? What was it like and what were the reactions of those around you? I can't remember my first, I was 16 yrs old though.

3. What comforts you most during your cycle? why? THIS WEBSITE, because of the sufferers here knowing what I'm going through.

4. What would you like to say to someone who is just discovering that their Headaches are really cluster? This will not kill you, and you should not let it control your life or put any emotional value into the pain.

6. Do You have any Photography or artwork that is inspired by the pain, or the pain-free moments? See above.

Title: Re: ClusterHeads - We Need You!
Post by LadyLuv on Jul 25^th, 2006, 4:48pm

First and foremost;
I would like to thank Clusterhead-Chuck for looking out for us.. That's what make me love you guys so much... always looking out for the family..

Secondly:
I would like to thank rgasperson for what you are attempting to do.

It's hard to put into words for some of us... so it's not that we don't want to comply... it's that we don't want to cry...

Peace & Blessings
Lady Luv

Title: Re: ClusterHeads - We Need You!
Post by sandie99 on Jul 26^th, 2006, 5:40am

Robert,

I think that your idea is wonderful. :)

I have posted here once a poem I wrote about Cluster family (I called it a song) and once a poem I wrote close to a hit. If you think that you can use them, do. :)

I have written loads of poems about ch/hits/pain/during hit. I just have plenty of notebooks, so it takes time to find them. But I promise to look up some and send your way.

Sanna

Title: Re: ClusterHeads - We Need You!
Post by rgasperson on Jul 26^th, 2006, 2:15pm

Thank You Sanna. Anything you can provide will be happily accepted. I look forwatrd to reading your work.

To everyone who has responded to this call, Thank You so Much. So far I have not posted any names to the work that was provided unless it was stated in the post (I believe Mike was the only one). If you would like your name to accompany your poem or work, please let me know when you post it.

If you already posted work and you want your name to go with the work. Let me know and I will update the book.

Thank you again everyone. This project is going to be awesome.

Robert.

Title: Re: ClusterHeads - We Need You!1. How would you de
Post by georgej on Jul 26^th, 2006, 2:42pm

>>1. How would you describe the Beast that is your Cluster Headaches?

Prior to finding clusterheadaches.com, I named it on my own. I called it "The Black Dog", and dreaded his cyclic appearance. I might as well have been the only clusterhead in the world for better than three decades.

The "Black Dog" ruled my nights--six weeks on, six months off for better than twenty years. I was frightened to sleep.

Can someone who does not get cluster headache even imagine this? The great balm of rest for most of the world is denied us. Instead, we struggle through a chamber of horrors and cope as best we can.

>>2. Do you Remember your first Cluster Headache? What was it like and what were the reactions of those around you?

1966. I was thirteen years old. I didn't know what was happening to me, and decided that I was most likely going to die in a few minutes. Not yet having developed the coping mechanisms I've built over the years, I raged and fought against the monster. My mother, bless her, treated it as an emergency and started to take me to the hospital. I think I scared her out of her wits. Before we got to the hospital, it vanished.

>>3. What comforts you most during your cycle? why?

Solitude and darkness. It's not just that I want to be alone with it in order to cope--more than anything, I don't want anyone to see it.

>>4. What would you like to say to someone who is just discovering that their Headaches are really cluster?

Don't be afraid. You can live with this--perhaps more fully than you could live without it. I know you can. It's a random occurrence. You've done nothing to deserve it--it just is. Make yourself strong, balance your pain with joy, and choose to live as fully as you can. Each day (with or without pain) is a gift--accept it with humility and gratitude to whatever has given it to you.

Talk to the people here at the board and get to know them--they are your greatest strength.

Best regards,

George

Title: Re: ClusterHeads - We Need You!
Post by Melissa on Jul 26^th, 2006, 2:57pm

Robert, you probably want to change in the last line of my first poem "What's to come" from "not a very nice person", to "as$hole", as that is how it is written. You also may put my name, Melissa Filtz, as the author of them both.

Thanks!
:)mel

Title: Re: ClusterHeads - We Need You!
Post by AussieBrian on Jul 26^th, 2006, 11:28pm

Hey rgas, you might want to consider a section on most quotable quotes from ch.com.

Margi, to a seriously distressed new supporter: "They go to 'place' we can't access, nor ever hope to understand".

LeLimey, to a newbie seeking diagnosis: "We're not doctors here, but we're expert patients".

And I thought it was Jonny but he says otherwise: "Frozen peas are my friends".

There'll be plenty of others, I'm sure.

Title: Re: ClusterHeads - We Need You!
Post by ClusterChuck on Jul 26^th, 2006, 11:59pm

Robert, thank you for your responce to my questions. I am satisfied that you are above boards and legit.

AND, thank you for undertaking this project!

Unfortunately I am not bright enough to write poetry, but, one of my sons asked me, years ago, to write a description of what one of my hits was like. I wrote it out. If you want that, I would be more than happy to send it to you. (Of course, I would have to find it first! haha!)

Good luck on this worthwhile project!

Chuck

Title: Re: ClusterHeads - We Need You!
Post by rgasperson on Jul 27^th, 2006, 11:51am

Hey Chuck. Your Description of a Hit would be perfect right after the Introduction. Please send it to me. I would love to read it and add it to what we have already.

Robert

We are up to 17 pages
http://www.roberttgasperson.com/ClusterHeads.pdf

Title: Re: ClusterHeads - We Need You!
Post by Ghost on Jul 27^th, 2006, 11:52am

Near the front can you put these items 1st one

These I think may be helpful to people new and old, I hope maybe to see them with KIP scale as additional help to newcomers.
Mike

Helpful Hints

• At each level of the Kip scale see prior and add to where you are.
• Most attacks last from 15 min. to 3+ hours.
• O2 is a valid and preferred treatment at most levels of pain to end(abort) a Cluster Attack sooner. Usually administered at 10-15 lpm with a Non re-breather mask.
• For most it is also necessary to use Imitrex injection. see "imitrex tip"
• Most oral meds and inhaled meds will not affect the attack you are in now, but if taken prior to attack may result in some relief.
• The Levels listed here are a guideline to measure the intensity of an attack.
• For most the attack ramps up rapidly and subsides almost as fast, but it may take several hours to recover from it. Very energy draining.
• Caffeine and Red Bull may also assist in aborting an attack.
• Most Cluster Headache sufferers are misdiagnosed for many years, some with sinus headaches, tension headaches, migraines, and even toothaches/infections.
• Cluster headaches can and often are accompanied by other types of headaches, Sinus, Stress, Migraine, and others making it hard to detect and/or diagnose.
• Cluster Headaches are real and should never be considered a minor inconvenience, The cause is still being debated but there is no known cure as of yet.
• Remember you are the one suffering, don’t let others tell you how much it doesn’t hurt!
• Shadow; some of the symptoms but without a measurable amount of pain(pressure).
• Twinge; Short burst of pain usually to fast to produce side effects.
• Phantom; Body experiences all symptoms of an attack without measurable pain/burning sensation. (Droopy eye, Running nose, and Tearing.)
• Episodic; Episodes of Cluster headaches that are under 1 year in length, or with 30 days or more during a calendar year of being Pain Free.
• Chronic; Episodes of Cluster headaches that are over 1 year in length, or with less than 30 days during a calendar year of being Pain Free.
• There are various methods and treatments, both conventional and non-conventional. Overall it seems Oxygen at a higher rate while using a Non re-breather mask seems to be the most effective abortive.
• Some people experience Cluster attacks as a result of a trigger ie. alcohol, smoking, foods, ect…
• Never let a doctor, or other medical professional dismiss it as psychosomatic, or imagined pain.

In Honor of Robert(Bob) Kipple who passed on the day this was posted. God Bless his work and Thank You Kip for being. May all who enter this site know the name Robert Kipple and find comfort with knowing he found for us a common ground. He passed peacefully in his sleep on 2/20/06.

The groundwork he laid before us,
the rest we must carry on.
Heaven has called up,
today a beloved son.
Pain in his life he knew,
but compassion he delivered.
For those of us that knew him,
knew he would have had it no other way.
Pain for most of us is a reality of life,
To be pain free a dream, but a dream we must realize.
Those he has helped and those will help still,
Remember Robert Kipple for all of us, forever will.

Mike 2/21/06
In Memory of Robert (Bob) Kipple Creator of the KIP Scale. We love you KIP!

Title: Re: ClusterHeads - We Need You!
Post by Ghost on Jul 27^th, 2006, 11:53am

2nd one

For quite some time, people have been posting numbers to describe the amount of pain that their headaches cause them. There was no real "guideline" so that we were all on the same page.... until now.

Our friend Mr. Bob Kipple was up late with the demon late one night and put the pain that we had been speaking of into what has affectionately been named The Kip Scale. I think you'll agree that what he's written down is right on the money.

Thanks for letting me put it up here Kip!

Pain level 0
No pain, life is beautiful
Pain level 1
Very minor, shadow's come and go. Life is still beautiful

Pain level 2
More persitent shadow's

Pain level 3
Shadow's are getting constant but can deal with it

Pain level 4
Starting to get bad, want to be left alone

Pain level 5
Still not a "pacer" but need space

Pain level 6
Wake up grumbling, curse a bit, but can get back to sleep with out "dancing"

Pain level 7
Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted

Pain level 8
Time to scream, yell, curse, head bang, rock, whatever work's

Pain level 9
The "Why me?" syndorme starts to set in

Pain level 10
Major pain, screaming, head banging, ER trip. Depressed. Suicidal.

Title: Re: ClusterHeads - We Need You!
Post by Ghost on Jul 27^th, 2006, 11:53am

The kip scale being the most important to all of us here.

Mike

Title: Re: ClusterHeads - We Need You!
Post by CHTom on Jul 27^th, 2006, 11:56am

Excellent posts and I like to think of Kip in heaven pain free forever.

Title: Re: ClusterHeads - We Need You!
Post by rgasperson on Jul 28^th, 2006, 6:25pm

Everyone has been awesome this week. Thank you so much for all the support and content. I believe we are up to 23 pages.

I plan to work on some of the information for the introduction this weekend. There are some other ideas brewing in this old brain.

Please continue to offer more suggestions and quotes and artwork, poetry, facts and anything else you can think of. I am excited about the momentum that we have going here. At this rate, this book will be finished in a month or so.

Have fun and have a pain free weekend.

Robert T Gasperson

Title: Re: ClusterHeads - We Need You!
Post by E-Double on Jul 28^th, 2006, 7:54pm

Check out my response in this thread.......
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=2005Gposts;action=display;num=1105191315
if ya like I will put in the old pix that are no longer available

Some lovely O2 huffs and ghoulish clusterface

Title: Re: ClusterHeads - We Need You!
Post by rgasperson on Aug 1^st, 2006, 5:32pm

Hey E-Double, I would love to see the photos for that posting. It would go well with your writing.

Everyone else. I am looking for more artwork, Drawings, doodles, any graphics that might go well with the book. It has to be drawn by you guys though. No stealing stuff off of the internet.

Robert

Title: Re: ClusterHeads - We Need You!
Post by ClusterChuck on Aug 1^st, 2006, 8:45pm

on 07/27/06 at 11:51:54, rgasperson wrote:

Robert, I sent it to you via email ..

Chuck

Title: Re: ClusterHeads - We Need You!
Post by superhawk2300 on Aug 1^st, 2006, 9:36pm

I am not a very good conscious writer, but when I am in extreme pain (not just clusterpain) I see visions and I am able to transcribe what I saw in my vision to paper, with what I think as much better results than when I "try" to write.

Here is one such vision, born in blinding pain, for the book, if it is good enough. If it does go in I would like credit or whatever they call it, and a way to purchase the book.

I can be a bit introverted but I am open to any feedback anyone has on this; if this stinks just tell me and I will continue to keep such things to myself.

---------------------------------------------------------------------

I have awakened to a new world. Blurring into consciousness and slowly rising in the crackling torchlight, I am welcomed by grays, grey-greens, and grey-blues. As I rise, hands run over the cold stone slab upon which I slept so comfortably. The silvery-smooth polished surface swirls like spring storm clouds beneath me. With capitals shrouded in inky darkness, massive columns rise from floor to ceiling. All around shadows dance upon shimmering marble walls, chaotically encircling the slab I now sit upright upon. Mists glide past like ancient lost spirits, slowly, slowly, slowly searching for long-rotted hearts’ deepest desires. They bend, twist, and twirl in the flickering torchlight, until with mouths agape in silent scream, they are pulled inside out as they dissipate into the cold, damp, night air.

Gazing into the swirling marble, thoughts comfortably begin to seep, ever so slowly, into my mind. I am, though namelessly. My thoughts are acutely aware of being, though I do not know whose body is filled by these thoughts. I am aware that I have lived, though I possess no memories of my own.

The focus of my stare reverts back to the surface of the marble, and the pale flickering light it reflects. I momentarily am caught staring into my own eyes, mirroring a face that is known to me, and yet new to me. Head slightly askew; gazing into the mirror, a quick flash of light traverses the face the reflection holds, revealing the eyes of The Jackal.

Title: Re: ClusterHeads - We Need You!
Post by rgasperson on Aug 2^nd, 2006, 10:00am

SuperHawk2300 - Would you like your Name on the work, or would you like Superhawk2300 as the writer of the work. If you would like your name, I will need you to eMail it to me. Your name is not on your profile. I would like you to give your peice a Title, too.

I am getting some really great stuff. Thank you Everyone. Keep it coming. I will try and post an update of the PDF this evening.

Robert

Title: Re: ClusterHeads - We Need You!
Post by superhawk2300 on Aug 2^nd, 2006, 6:11pm

I sent an email, but I guess I am having pc issues. Lemme try again and let me know if you don't get it.

Title: Re: ClusterHeads - We Need You!
Post by alchemy on Aug 2^nd, 2006, 6:38pm

I don't know if you can use this or not

The Beast finally backs off and I lie down on the cold garage floor sweating and panting like a dog. God I'm tired. I'm at the point where I'm to tired to be happy the Beast is gone. I want to sleep God I want to sleep, but sleep brings on more battles. Battles that are won but the war never ends. I get up and go inside for a drink and see the clock. Ten o-clock, three more to go tonight before my dawn banger. My eyes fill with tears, so this is life.

Title: Re: ClusterHeads - We Need You!
Post by vig on Aug 3^rd, 2006, 12:43pm

oh, before I forget....

Some of the COOOOLEST ClusterHead artwork comes from an Italian ClusterHead named Zaire...

you NEED to get a hold of her and ask if she might participate.

It's Eerily great.
;;D

Title: Re: ClusterHeads - We Need You!
Post by burnt-toast on Aug 4^th, 2006, 9:57am

Here's my contribution - good luck.

From the silence of rest,
A nightmare begins,
Not from this world, No…
Not from this God,
Fear encounters recognition,
Recognition encounters pain.

Unworldly, crushing, searing, more,
Attacked from within,
No hiding, no escape,
Indescribable, unimaginable by most,
A headache they say, but “they” not its host,
Few understand that Hell’s raging inside.

Unrelenting, seeking control,
Rest peacefully, sleep silently, act freely, no more,
May mercy prevail and end all this time,
Unnoticed hours, fading then gone,
Exhaustion breeds rest, drift away.

From the silence of rest,
A nightmare renews,
More powerful, more in control,
Fear rest, fear sleep,
Exhausted, weak,
A nightmare turned real.

Tom (Burnt-Toast)

Title: Re: ClusterHeads - We Need You!
Post by erickthered on Aug 4^th, 2006, 10:10am

I have a piece of digital art work a friend of mine did for me to describe the pain I feel, I'll look for it and scroll back up and email it to you when I locate it in the mess of 200 gigs 8)

Title: Re: ClusterHeads - We Need You!
Post by stevegeebe on Aug 4^th, 2006, 10:34pm

Here's mine.

"Dear God in Heaven, please.. please.. please...help me please, God, please...."

Steve G

Title: Re: ClusterHeads - We Need You!
Post by Jonny on Aug 4^th, 2006, 10:59pm

on 08/04/06 at 22:34:24, stevegeebe wrote:

Here's mine.

"Dear God in Heaven, please.. please.. please...help me please, God, please...."

Steve G

Yup, I mimick Steves chant.....sad but true :'(

Title: Re: ClusterHeads - We Need You!
Post by rgasperson on Aug 7^th, 2006, 10:15am

Hey everyone. I am loving what is coming through the board. Please keep it up. I will have an updated PDF loaded by the end of the day Tuesday. Keep an eye out for it.

robert

Title: Re: ClusterHeads - We Need You!
Post by rgasperson on Aug 9^th, 2006, 1:46pm

OK. We are up to 29 pages. I still have a few more things to add. I still plan to write that introduction in the near future.
http://www.roberttgasperson.com/ClusterHeads.pdf

I am looking for more Favorite Quotes, Answers to the original 4 questions (See the very first post in this thread) and of course, more artwork.

Robert T Gasperson.

Title: Re: ClusterHeads - We Need You!
Post by JenniferD on Aug 9^th, 2006, 1:58pm

the thing I say when getting 8+'s....
GET THIS THING OUTTA MY HEAD...said between wracking sobs.

I do have a drawing my son did for me when he was about 7 or 8 (8-9 years ago). I guess it would be a good representation of ch thru a child's eyes. :(

Title: Re: ClusterHeads - We Need You!
Post by rgasperson on Aug 15^th, 2006, 4:04pm

Please send it to me. I would love to see how a child views cluster headaches.

I think This book is starting to wrap up. It seems that the interest is starting to wane. I feel like I can strech the book to 48 pages of really good content. This will lower the overall price and make them easier to have in doctors offices.

What else I will need to finish the book.

1. More Quotes.

2. More answers to the questions from the begining of this thread.

3. Good Websites and Books that will be good references for people who want to learn more about Cluster Headaches.

4. Someone who can get in touch with Zaire to see if she might want to do the cover for the book.

5. I would still like to find someone who might be willing to describe the beast. around 300-500 words or so.

Title: Re: ClusterHeads - We Need You!
Post by ClusterChuck on Aug 16^th, 2006, 12:21am

I forgot to answer your questions, so here are my responces:

1. How would you describe the Beast that is your Cluster Headaches?
My beast is as devious as they get. Just when I feel I have him figured out, he changes things, just to mess with my mind. I actually feel that I have two beasts. I am one of the rare ones that gets hit on each side of my head. I can go from one side to the other, or stay on one side for several hits. But every now and then, I get hit on both sides at once. Hence I feel I have two beasts, and they don’t pay attention to what the other one is doing.

2. Do you Remember your first Cluster Headache? What was it like and what were the reactions of those around you?
Even though it has been over 27 years ago, I remember it well. It was only my wife and I. She called for an ambulance, and they rushed me to the hospital. When I got there, they felt it was beyond their means, and life flighted me to a big teaching hospital.

No one could figure out what was happening to me.

By what I now know, I would rate that first one as a 4 hour KIP 9.

3. What comforts you most during your cycle? why?
I am chronic, so I always have them. The one thing that saves my sanity is something that I learned from a fellow clusterhead. That person told me not to dwell on the hit, but concentrate on the pain free time, between hits.

So, I just survive the hit, and then enjoy life to the fullest, in between hits. I live my life for the pain free time, and refuse to let the hits control my life!

4. What would you like to say to someone who is just discovering that their Headaches are really cluster?
You CAN survive this hell. It is NOT the end of the world. Clusters will not kill you, by themselves.

5. Do you support a loved one who suffers from Cluster Headaches? Describe what it is like for you to watch them go through the pain, and what you do to try to help them.
I do not support a blood family member, just various clusterhead family members, during any of our get-togethers. BUT I have been present when another clusterhead has been hit. It is EXTREMELY difficult to watch, as I KNOW what they are going thru. It is SO frustrating. But I know that all I can do is make sure they have all the weapons that they need (oxygen, ice, imitrex, or whatever), sit and be there for them, and give whatever support they need. It does help to know the clusterhead, and what they like or need during a hit. This is something that must be discussed BEFORE the hit.

Chuck

Title: Re: ClusterHeads - We Need You!
Post by andrewjb on Aug 16^th, 2006, 12:21am

:D.fantastic.